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Old 02-17-2015, 12:24 PM   #1
sisterofher2+
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Question What about non-orthodox "cures"? Have you tried?

Hello ladies.

I do not have cancer myself. It is my sister, who was diagnosed with HER2+, ER+/PG+ stage 2 breast cancer. She underwent mastectomy, chemo, herceptin and is now on Tamoxifen.

When she was diagnosed, we had no idea what to do, what was good, what might have helped. There's no cancer in our family history.

My sis listened to her doc and did everything her doc told her to do. She is still doing exactly what her doc says and prescribes although her quality of life has been reduced dramatically due to Tamonifen use. She has lots of side-effects.

I myself did a lot of research about cancer, read studies, bought books on cancer treatment published by MDs and contacted 2 integrative cancer doctors in the US, asking for advice on the situation.

When I was reading this forum the other day, I got lots of questions from you, ladies.

Can you please answer them? I am trying to understand why my sis is doing what she is doing (not believing that a natural substance or a combination of natural substances could make and keep a person "cancer free" but only trusting the chemical pharmaceutical drugs). She is still very young, has 2 small kids that need their mom alive and healthy.

Have any of you ladies tried alternative treatment protocols (vegan diets, juicing, the Budwig protocol, UV protocol, aloe vera, apricot seeds? Have you followed this or that protocol diligently for a period of at least 6-8 weeks with benefits, i.e. remission, being "cancer free"?

I would really appreciate any advice on this matter. You see, my sis is now in total denial that anything natural works, because her oncologist told her smth like "if anything natural really worked, all the people would have been cured and remained cancer free".
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Old 02-17-2015, 02:01 PM   #2
Lucy
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Re: What about non-orthodox "cures"? Have you tried?

Has your sister discussed changing to a different drug with her oncologist? Maybe one where the side effects aren't as bad? There will likely be side effects with anything she takes but maybe she can find something more tolerable. I've heard that tamoxifen can be rough and some just have to stop taking it due to the side effects.

I was a vegan for 4 years prior to being diagnosed with cancer so, at the least, it didn't prevent it or "cure" it.

If I were your sister, I would talk to my oncologist (and maybe even get a second opinion) and ask what not taking tamoxifen does to her odds of recurrence, given that she's gone through chemo and herceptin treatment. I might even ask (insist) if they could do scans or MRIs to see if there is still cancer left before I made any decisions. Ultimately she will have to decide if what she's going through right now is worth the risk of not taking it.

That all said, healthy eating and exercise don't hurt, although a lot of times it's easier said than done.

I wish you and your sister all the best and hope things get better for her. She's lucky to have you looking out for her like this. Sending cyber hugs . . .
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Old 02-17-2015, 04:16 PM   #3
sisterofher2+
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Re: What about non-orthodox "cures"? Have you tried?

Thank you, Lucy.

You were a vegan ( I suppose you still are), did you take B12 vit as a supplement? Flax seed oil?

I will definitely talk to my sis asap regarding the second opinion about taking tamoxifen or not. He doc said there's no other drug available for her at the moment.

You see, she knows (!) that tamoxifen is a cancerogen and may actually increase her chances in getting liver cancer. The side effects she is experiencing are liver discomfort/pain, productive coughing and hay fever like sypmtoms (in addition to aches and pains all over the body, concentration difficulties, hot flashes and way too much anxiety).

Her doc suggests that she should be taking tamoxifen for 10 years, instead of 5, referring to some recent study. But my sister is very scared of the permanent liver damage/hepatitis/liver cancer.

But she can't make a decision on her own. She is totally dependant on her doc's opinion and prescriptions. If he says smth like "you better stay on tamoxifen for another 9 years, I will prescribe you 10 other drugs to manage your side effects", she will accept it. Seriously. She is way too scared to have her cancer spread or that a new tumor is being found in her body.
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Old 02-17-2015, 05:10 PM   #4
waterdreamer
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Re: What about non-orthodox "cures"? Have you tried?

I too was vegan, the problem was that I ate too much sugar, so that negated any of the positive effects of eating a healthy diet. I did not get enough exercise and I was completely overwhelmed and stressed out. I believe that diet does make a difference. There is a great book which I recommend reading called Radical Remission. I am experimenting on myself right now. I have not done any chemo since November, and am juicing, eating vegan and taking supplements. I have not done any scans since September, and will do my next ones in March, so I will keep you updated. Thank you for caring so much about your sister and her children!!
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 02-17-2015, 05:11 PM   #5
Lucy
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Re: What about non-orthodox "cures"? Have you tried?

I was taking a B12 supplement but am taking a break from them at the moment because my levels were very high. I've heard flax seed oil is good but I haven't tried that yet.

Okay, about the symptoms . . . is your sister finished with herceptin? I'm not sure what you mean by productive coughing but I have a cough midway between my treatments. My oncologist says this is not uncommon. The concentration difficulties are likely due to the chemo. I'm done with chemo and I still have that issue, as do many others on this board. I was told it could be 18 months to 2 years before that got better but from what I'm hearing on this board, that may last longer than that. They can do cognitive testing (I had that done just last week) to see if there are deficients and if so, where they are. I'm still waiting for my test results but my understanding is they give you information on how to cope/deal with any cognitive deficiencies (including concentration difficulties) you (in this case your sister) may have. My oncologist's nurse told me that hot flashes are a good thing. She said that it means the drug is working. I'm taking a different drug than your sister (I'm taking anastrazole which is more for postmenopausal women, which I get the impression your sister is not) but I would think it would be the same. I read somewhere that if you're having hot flashes as a side effect that it improves your odds by a certain percent and the muscle aches and pains also improve your odds - the aches and pains percentage was greater. I can't remember the exact percentages for them but it was pretty significant. So why it may be a pain (no pun intended) it's my understanding that it's a good thing. I'm wondering if the anxiety is more about having cancer than it being a side effect of any drug she's taking.

My oncologist also told me that I would need to take the anastrazole for 5 years but told me that is because they don't have enough long term information on its effects and that it's possible that they will extend it to 10 years before I reach the 5 year mark. So I don't find it surprising that your sister would be told 10 years for tamoxifen. But I do think it's possible that something else may be as effective without all the bad side effects.

Good luck. Keep us posted!
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Old 02-18-2015, 01:08 PM   #6
thinkpositive
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Re: What about non-orthodox "cures"? Have you tried?

It is so wonderful to see how much you love your sister. You are both so lucky to have each other.

My mother had breast cancer at 59 and had to take tamoxifin for 10 years. Although she did have side effects (raging hot flashes), the tamoxifin did work. She died of dementia related issues at 81 without ever having any further issues with breast cancer. Throughout her life she was very strict about eating healthy foods and always exercising. She was never a smoker, never overweight, never a drug user, and no family history of cancer. However she did get cancer. Did the tamonifin "cure" her? We'll never know. However, she BELIEVED that it did. Everyday when she took the tamoxifin, she was confident that this was the "cure". Because she felt so strongly that it was the "cure", I believe in her case it was. The mind is a very power full.

My cancer is not ER+ so I do not need to take tamoxifin. However, I do believe in using non-orthodox methods to supplement chemo, surgery, and radiation. There is a great book that I'd recommend that explains these methods (Anti-cancer, a new way of life). Perhaps your sister would be open to some of these methods.

Bottom line, your sister will need to find a treatment(s) that she believes in. Nobody has this cancer thing figured out yet so we each need to do our research and then select a treatment that we believe will work for us.

Good luck to you and your sis.
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8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
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Old 02-18-2015, 05:07 PM   #7
sisterofher2+
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Re: What about non-orthodox "cures"? Have you tried?

Lucy, by productive coughing I mean not the dry type of cough, but the one with mucous discharge. She takes her tamoxifen pill in the morning and then all the side effects appear right away. They wear off by the evening.

She was done with herceptin a long time ago. Possibly a 6-8 months ago if I'm not mistaken.

The anxiety is definitely related to the fact that she fears another cancer diagnosis, however I've known her as a very brave and a fearless young woman all my life, and when I hear her telling me how scared she is about this or that several times a day, it makes me wonder whether it is the drug that is making her way too anxious and restless.

I have been reading about the B12 vitamin. There is no toxicity associated with its "high levels", on the contrary, it is of the protective effect to the healthy cells. Just like C-Vit, D-Vit, B17, E-vit. Vegans should be taking a supplemental B12 vitamin. I suppose that there's enough B12 in a multi vitamin complex just in order to cover the daily minimum.

The flax seed oil is a great natural source of omega-3 fatty acids for vegans. The Budwig cancer treatment protocol is based on the flax seed oil and cottage cheese. I've read a book by Chris Woollams called "Oestrogen. The killer in our midst". He mentions phytoestrogens (flax seed is a phytoestrogen), that if taken daily will sit on the receptors of the cells instead of the dangerous types of estrogen (oestradiol), thus not letting the estrogen become dangerous to the body.

Thank you, thinkpositive, for your reply. My sis does not believe in anything that is unorthodox. She wants to believe, she does, but there are so many fears and doubts in her. She primarily believes every word her doc says and if he tells her that she should excersise every day - she does that. She asked the doc about the apricot seeds (after reading about them on a cancer related forum) and dropped off the idea of trying them because her doc did not approve.

Every now and then one can see articles in the newspapers/testimonials from people who refused chemo, radiation and in some cases even surgery and managed to rid off cancer by using other treatments. My sis believes that it may be true, but is unsure whether these kinds of treatments would cure "her" cancer (the agressive her2 positive type) if it decided to form a tumour again or spread all over.

We now know why she may have got cancer on the first place: oral contraceptives (prolonged use) since early teens, diet with junk/processed foods, loads of sugar, too little or no excersise.

By the way, ladies, have any of you been visiting the cancertutor.com website? Any thoughts on the treatment protocols described there? I tried to make my sis begin studying the site, but she hasn't shown any interest yet. She does however eat healthier now. No more added sugar in her diet, lots of veggies and fruit, she excersises every day now and takes yoga classes.
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Old 02-18-2015, 05:33 PM   #8
Lauriesh
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Re: What about non-orthodox "cures"? Have you tried?

I give you credit for researching and trying to help your sister, but this is her fight and she needs to do it her way.
honestly,I would resent my sister always telling me about this cure or that, or don't eat this or that.
While it is good for everyone to eat healthy and exercise, there is no definitive proof that turmeric or apricot seeds or Budwig will keep her cancer from returning.

I would support her, help her with her kids, let her discuss her fears without dismissing them .

Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-18-2015, 05:51 PM   #9
sisterofher2+
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Re: What about non-orthodox "cures"? Have you tried?

Thanks for your opinion, Lauriesh.

I am not telling her what to do or eat/not eat. She is taking her own decisions based on what she deems fit and what her doc advises her to do or eat.

I just wonder whether use of tamoxifen gives a "definite proof" that her cancer isn't going to come back? You see, I doubt that it does. The research and studies on tamoxifen actually prove the opposite. OK, fine, maybe that particular type of cancer wouldn't come back, but the other one, the more agressive kind might (brought about by the drug). And then there is no treatment and no cure.

You do not have to remind me that this is her "fight". I know that perfectly, thank you. I did not research on cancer before she actually requested that I help her with obtaining some information on the "cure". I wouldn't be saying anything if I wasn't asked.
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Old 02-18-2015, 06:07 PM   #10
Lauriesh
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Re: What about non-orthodox "cures"? Have you tried?

There are no guarantees that tamoxifen will keep the cancer from returning, but there are studies and trials,etc that show it definitely reduces the risk of recurrence. It would not have been approved by the FDA if there was no proof.

You stated that "I tried to make my sis study this site, but she hasn't shown any interest"
That seemed to me that maybe you were pushing too hard.

Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-18-2015, 07:25 PM   #11
rhondalea
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Re: What about non-orthodox "cures"? Have you tried?

You might want to suggest to your sister that she start taking the Tamoxifen at night. That's what I do. I have no trouble at all with Tamoxifen, and I'm now cancer free almost four years.

If she's having an unbearable time with it, then she needs to consider the options that will allow her to switch to aromatase inhibitors.

Most of the treatments you've described have been thoroughly debunked. There's no evidence for their efficacy, and many have died relying on alternative "cures." Using complementary medicine, on the other hand, is often beneficial to quality of life, and it can support the traditional treatments that have been demonstrated to work best.

Nothing provides a guarantee. Cancer likes to come back, and it's sneaky. We do everything we can to avoid it, but even very early stage women have been known to develop metastatic disease.

I agree with Lauriesh that you need to allow your sister to make her own way. It may well be that her choices have saved her life, and she will live a long and healthy one going forward. Before Herceptin, women with HER2+ cancer had very poor survival no matter what treatment they chose. Now, because of Herceptin and other targeted therapies, even HER2+ metastatic patients are surviving and thriving. The alternative community has a lot of anecdote--everyone's cousin's uncle's sister-in-law's best friend was saved by a quack cure--but if there were studies that demonstrated these treatments worked, medical doctors would incorporate them in their treatment plan. They don't work, so doctors discourage patients from pursuing them.

One thing you might suggest to her is Metformin. There's some evidence that it prevents recurrence, and there's a large study going on right now. It's probably too late to join the study, but it should be possible to get a doctor to prescribe the study dose (850 mg/2x/day).

Finally, I would not recommend cancertutor.com to my worst enemy. It is a pseudoscience website. You could, however, help your sister by directing her to this group.

Rhonda Lea
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
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Old 02-19-2015, 08:23 AM   #12
sisterofher2+
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Re: What about non-orthodox "cures"? Have you tried?

Thanks to everyone for replying. God bless you all.
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Old 03-04-2015, 06:16 PM   #13
JessicaV
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Re: What about non-orthodox "cures"? Have you tried?

Hi, How lovely of you to care so deeply about your sister's happiness and health.

My cancer is not ER+ so I do not take tamoxifen.

However I have good friends who do. I put your question to them and somewhat belatedly, here is what they told me. I hope it helps.

The two main and most distressing initial symptoms they describe are hot flushes/menopausal symptoms, and joint pains which can be agonising, along with concern about their bones.

Here's what they do about them.
One friend has several fans in the rooms she spends most time in, so is capable of creating an incredibly strong blast of cool air that she can sit in the middle of. Her grandchild loves it too! She says it really does help and is such a relief but also fun.

For the joint pain, a friend who gets bad arthritic pain too recommends 1500mg daily of glucosamine sulphate (preferably the Dona brand crystaline type which she gets through Ebay or Amazon). Her oncologist said this is fine, and also told her to take VitD 1500units a day, plus watching to see she gets enough calcium at diff meals to her main iron intake, plus the normal supplements of minerals and vitamins. This has greatly reduced her joint pain and worry about bone density etc.

The key point they tell me is that unless they can cut the estrogen in their body by either Tamoxifen or a very similar drug, or by surgical removal of ovaries, their bodies are perfect petri dishes for their type of cancer to regrow. And even though the side effects are bad, and they don't yet want this surgery, they want to live and keep on living. They prefer take these artificial pharmaceuticals which are part of a proven system than to risk their lives depending instead on alternative methods that are not yet properly proven scientifically.

Each has to make her own choice, and sometimes it is hard for our loved ones who disagree with our choices and think we would be much better off following their choice. I would urge you to keep an eye on what new alternatives are arriving in the way of new drugs and scientific research in this cutting edge area. Maybe a better choice you are happy with too will arrive tomorrow.
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 03-04-2015, 06:52 PM   #14
Kkmom
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Re: What about non-orthodox "cures"? Have you tried?

Lucy,
I don't want to get this thread off track - but your post sure made me feel good. I have been NED for about 2 years now. I take arimidex and I have tons of hot flashes, along with joint pains. I find myself second guessing any pain or change in my body "thinking could it be cancer". So after reading your post about what the oncologist nurse has to say about the side effects from arimidex can be positive - I feel a lot less anxious about any little pain or twitch I have. Thanks for your info - Pam
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[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 5 YEARS - DECEMBER, 2017!!!
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Old 03-04-2015, 08:55 PM   #15
leldredge1
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Re: What about non-orthodox "cures"? Have you tried?

It sounds like your sis is following her doctors advice, exercising, eating healthy and trying to prevent a recurrence. I have 3 sisters and they have all been very supportive of me. If they tried to tell me why I probably got cancer, what I should eat, what I should not eat, and voiced doubt in my team of doctors and my decisions....I would not be speaking to my sis at all.
__________________
Laurie in Idaho
IDC, Her2+++, PR- ER- diagnosed Feb 2014 1 month before 53rd bday
2.6 cm mass right breast with lymph node involvement
THP-FEC neoadjuvant chemo regimen

THP (taxotere, Herceptin, perjcta) every 3 weeks for 4 doses started 3/27/14
BRCA negative
bilateral mastectomy with lymph node dissection done June 2014 15 lymph nodes removed all negative for cancer, breast tumor gone
FEC (5-FU, epriubicin, Cytoxan) every 3 weeks for 4 doses, Herceptin every 3 weeks for a year, then
radiation for 6 weeks
New Years Eve 2014 completed radiation
September 2015 Latissimus Dorsi Flap reconstruction
March 2016 rib fractures under implant
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Old 03-05-2015, 03:09 AM   #16
JessicaV
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Join Date: Apr 2014
Posts: 174
Re: What about non-orthodox "cures"? Have you tried?

Dear sisterofher2+, I am not sure if you understand how cancer metastasises? HER2+ breast cancer is highly prone to metastasizing, so is a bit like melanoma skin cancer in this way, where some other breast cancers are much less prone to metastasizing like common squamous cell carcinoma. When a cancer that is highly prone to metastasizing changes from an "in situ" cancer to an invasive cancer, it starts to slough off cancer "seeds" known variously as metastatic cancer cells, cancer stem cells, stem-cell-like cancer cells. They can transform back and forth from very primative menenchymal cell form to a very typical epithelial cell form.Some of these cells stay in the tumor They are then capable of changing the gene-line of the tumor cells to ones that use different pathways enabling them to get around pathways initially blocked by drugs or radiation. This makes the next generation of tumor cells resistant to that specific drug or treatment. Some of these cancer seeds float off in lymph fluid or blood, and are not always able to be targetted by any treatments because they don't divide much at that stage. They hunt out suitable spots in mostly in brain, liver, lungs and bones, and grow into metastatic breast cancers. Luckily the new drugs for HER2+ cancers including herceptin, perjeta and others are good at seeking out these baby metastatic cancers where cells are dividing quickly, and killing them off. Each of the new ones targets diff pathways which gets around the resistance problem.
This metastasing process is the biggest risk that confronts all of us with HER2+ breast cancer, whether or not we already have metastatic cancer. This is what will kill us if we are to die of this cancer. HER2+cancer used to kill over 50% of those who got it, even when caught very early, whatever the patient did in terms of good personal health care, diet, exercise, apricot kernels etc. Now with the new drugs, that drops to between 2% and 20% depending on diagnosis. For those who are ER+ Tamoxifen and Aromase Inhibiters and the new hormone treatments that cut the estrogen in the body down to a minimum, modifying the hormonal environment means the cancer seeds are much more likely to fall on infertile ground where they cannot grow. The 5yrs/10yrs issue I understand is about how long changing this hormone environ continues to produce a big drop in new metastases. I had a friend who got a dozen golfball sized metastatic tumors in liver and lungs within months of stopping tamoxifen after 6yrs on it. Luckily with intensive weekly chemo and herceptin and hormone treatment for a year, they have gone again. But it demonstrated quite clearly for her what a difference that hormone treatment was making. Everyone is different and the diff it makes depends on how strongly ER+ one is.
So even if some of these alternative treatments can help prevent primary cancers, unless they can provide powerful protection against metastatic cancer stemcells, they are not going to be nearly as much help to your sister as the Herceptin-family of drugs, the chemo most effective in combination with those, and the estrogen-reducing drugs.
Your sister may well, like me, be currently mostly concerned with the inner battle to put aside fear when standing in the shadow of death which is what it means to have this sort of cancer. For me, I have my treatment plan, I have good medical team, I really don't want others revamping this for me, because I have other places I want to be putting my energy. I strongly suggest you ask her to tell you frankly and honestly how you can be the best sister to her at this really tough time for her. It is really important to be sure you are helping her not hindering, and that you keep checking with her that you are not getting it wrong. This time could bring you and your sister close, or it could divide you in a very sad way if you get it wrong.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 03-05-2015, 02:59 PM   #17
ariana
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Join Date: Jun 2014
Posts: 147
Re: What about non-orthodox "cures"? Have you tried?

Jessica V. I needed this post. I was balking at taking Arimidex. Stopped tamoxfin
do to sever muscle pain in my legs. I am still on Arimidex that causes sever gas and
constipation . And once in a while joint pain thats constant till I go off of it for
48 hrs then its gone and I begin again. THANK GOD THATS FEW AND FAR BETWEEN
when I feel the need to do this. I have put off going on Fosamax to get the side effects from this drug under control. So I will know which drug is causing what
problems. This weekend I will be getting my persciption filled.

YOUR EXPLAINATION AS TO WHAT HAPPENS to cancer cells have been an eye opener
for me. WHICH TELLS ME newly diagnosed patients should attend a type of class
to understand why things are done. The Onc. are over whelmed to dispense such
knowlede so throughly as you just did. I will be saving your post for future REF.

THANKS SO MUCH.
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Old 03-05-2015, 05:02 PM   #18
JessicaV
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Join Date: Apr 2014
Posts: 174
Re: What about non-orthodox "cures"? Have you tried?

Hi, Glad this info has been helpful to you. I strongly believe that knowledge is power and that we have to be able to put together the fullest picture we can from the most probably research findings to make the best decisions for ourselves, and to handle the reality of this cancer well.

I do feel like a voice in the wilderness prophesising gloom and doom, but it really bugs me that this vital bit of the picture is left out when we are being told about our cancers, treatment options, prognosis etc. Even if it is scary information, it seems to be accepted as the most probable explanation, though not totally proven.

When my daughter found research that suggested that lymph involvement happens parallel to the spread of the cancer but there is not a direct step-by-step pathway, I didn't like what I was hearing: it came out of left field, she could not be right. Then we found the research into cancer stem cells. That info made sense of the randomness of who gets mets and who doesn't, why TNBC and HER2+ are classified as much more aggressive cancers, how resistance works, etc.

I have heard that some cancer vaccines may be based on the cancer stem cell processes. But my onc said until one or more targets can be identified on the CSC, researchers cannot start testing/developing drugs that hit those targets. It will come I am sure.

But do follow the advice of others on this thread, and explore different effective drug options, and keep up to date with both options and good treatments for side effects. (I am sure you do that, but don't settle for less than the best)
Wishing you well.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 03-05-2015, 07:37 PM   #19
Kkmom
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Re: What about non-orthodox "cures"? Have you tried?

Jessica,
I just want to say "Amen" to your post. I have read more than I every wanted to know about breast cancer, but your info is one of the best. Pam
__________________
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 5 YEARS - DECEMBER, 2017!!!
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Old 03-06-2015, 12:05 AM   #20
Jackie07
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Location: "Love never fails."
Posts: 5,801
Re: What about non-orthodox "cures"? Have you tried?

In response to the question: I would really appreciate any advice on this matter. You see, my sis is now in total denial that anything natural works, because her oncologist told her smth like "if anything natural really worked, all the people would have been cured and remained cancer free"。

I've experienced exactly the same thing after my brain (tumor) surgery in 1990. It was a huge Central Neurocytoma that had been growing with me for probably 30 years. It was too big, it had to come out! The surgery took 23 hours ... Oldest Brother was the representative from overseas where all my family/relatives live. It so happened that my neurosurgeon is of the same ethnicity as me. Consequently, when my (Gringo) husband brought to his attention that my Oldest Brother was using Chinese herbal ointment to massage my stiff neck and shoulder (due to 10-day semi-comatose), the neurosurgeon's response was simply: "They believe in that sort of stuff."

Fast forward to 2003, when I was diagnosed with breast cancer. (Right, it's all my fault - as my family members (Father, Mother, 3 older Brothers and 2 older Sisters) would tell you: "She never eats right, never goes to bed in time, never listens to us ..." Then in 2007, right around the time when I was diagnosed with recurrence, they shielded the news of 2nd Brother's colon cancer from me. He was the healthiest person in my family, thus my most harsh critic. Since I'd had some training in medical librarianship, I did some digging via the Medline Database. 'Brain, breast, Non-Hodgekins Lymphoma (Mother was diagnosed/treated in 1998), and colon cancer' - and I found a cluster called 'Lynch Syndrome'. Ah Ha! It's in our genes. There're some problems there that cause the cells not able to repair itself properly during cell division.

I felt exonerated!

It's natural for family members to be concerned and want to help any way they can. Oldest Brother is also an amateur fortune-teller ... Fortunately I'd had some training while a volunteer counselor, otherwise, it would have really been tough (if not impossible) to handle all the advice/quarrels while trying to face my own challenges.

Be supportive, and be available. Your sister definitely appreciate your standing by her side. I know I did and still do.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 03-06-2015 at 01:52 AM..
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Old 03-06-2015, 04:23 AM
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